Melissa (Raabe) Lorang and her husband, Tim, learned in March that the daughter they are expecting in late July has been diagnosed with anencephaly, a fatal neural tube birth defect. They have elected to carry their pregnancy to term, knowing their daugh

Yes, it was a Monday, the first day of a long work week, but it was also the day of Melissa’s 20-week ultrasound - the day the expecting parents were going to learn the gender of their baby.

Melissa was convinced that the little ball of life kicking around in her tummy was going to be a girl - so convinced that she had already started furnishing the nursery in their home with furniture fit for a little girl’s liking. From Melissa’s “short list” of 16 girls’ names, she and Tim had selected Madilyn for the name of their daughter. There were more than 30 potential names to consider if the baby happened to be a boy.

“It was exciting because we were going to find out if the baby is a boy or a girl,” Tim recalled.

The late-afternoon ultrasound took place at Alegent Bergan Mercy Medical Center in Omaha. Melissa’s mother, Joyce Raabe, joined Tim and Melissa at the hospital to take care of their 19-month-old son, Noah, while the ultrasound was being carried out.

Minutes into the procedure, the ultrasound tech told Tim and Melissa that she didn’t see “any little boy parts,” confirming Melissa’s hopes that their baby was indeed a girl.

Tim and Melissa were happy. They were going to have a daughter and Noah was going to have a baby sister.

* * *

‘Incompatible with life’

The ultrasound continued and seemed to be going fine. However, about 15 minutes into the procedure, the technician excused herself from the room, implying that she was having problems getting proper measurements of the child. Melissa didn’t think anything of the tech’s abrupt departure, assuming that there might be a minor glitch with the ultrasound equipment.

“She said she wanted the radiologist to check something,” Melissa said. “She was gone for awhile, but she kept peeking in. I had no clue, but Tim knew something was wrong.”

After a short wait, a radiologist made his way into the room and took a first-hand look at the ultrasound himself. A moment or two later, he broke the devastating news to Tim and Melissa that he believed their child had anencephaly – a rare and fatal neural tube birth defect.

“He (radiologist) was pretty vague,” Melissa said. “He said, ‘Your doctor will tell you what’s going on, but what I think I’m seeing here is a condition called anencephaly, which is incompatible with life.’ Those words (incompatible with life) are quite memorable. I think it’s pretty common terminology, but I have thought numerous times since, that has got to be the coldest way to phrase it.”

Anencephaly is a condition that affects the formation of the brain and the skull that surround the child’s head. The condition results in only minimal development of the brain. In anencephalic pregnancies, the brain often lacks part or all of the cerebrum (the area of the brain that is responsible for thinking, vision, hearing, touch, and movement). A child with anencephaly is unable to sustain life outside the mother’s womb.

The news was shocking and confusing – totally incomprehensible – to Tim and Melissa.

“He (radiologist) never really offered any answers,” Melissa said. “He kept saying, ‘You need to talk to your doctor.’ I don’t think we really got it. I think I probably even asked, ‘Is she going to be OK?’”

In a matter of minutes, a call came into the room from the office of Dr. Daniel Kirsch, Melissa’s obstetrician, who had been informed of the radiologist’s findings. Melissa was given the option of having a second ultrasound done immediately by Dr. Michael Barsoom, the hospital’s Director of Maternal-Fetal Medicine, or coming back a few days later for a follow-up.

Understandably, Tim and Melissa didn’t want to spend the next 48 or 72 hours in limbo, wondering if their daughter’s condition had been diagnosed correctly by the radiologist. They chose to have the follow-up ultrasound done immediately.

Dr. Barsoom agreed with the anencephaly diagnosis. After the ultrasound, he opened up a medical book that provided an explanation of anencephaly. Dr. Barsoom made sure Tim and Melissa understood that the condition is always fatal. Their child, if born alive, would likely live for only minutes, hours or days. There is also a chance that their baby could be stillborn.

“Is she (our daughter) in pain? He said, No,’” Melissa recalls. “Then Tim immediately asked, ‘Is Melissa in any danger?’ He said I wasn’t.”

* * *

The Three Options

Tim and Melissa were presented with three options – terminate the pregnancy by having an abortion, induce labor early (after the baby becomes viable at 24 weeks) or carry the pregnancy to term.

If they chose to terminate the pregnancy, Tim and Melissa were told, they would not be able to have the abortion performed at Bergan Mercy, a “Catholic hospital.” Inducing labor early would require approval from the hospital’s ethics board.

The thoughts that were going through her mind during the meeting with Dr. Barsoom are still vivid in Melissa’s memory.

“No matter which choice we made, the end result is going to be the same – she will die,” Melissa remembers thinking. “Are we calling the shots and saying when? How far is too far and how far is enough? What can we live with personally?”

Tim and Melissa left the hospital that night still trying to make sense of what had just transpired. Feeling saddened, shocked and distraught, they both knew there was a difficult decision that had to be made. They were encouraged by Dr. Barsoom to take their time. It was a decision that would carry a lasting impact on their lives.

“I think we were probably both thinking different things,” Melissa said. “Essentially, I was being told that she’s brain-dead and she couldn’t live without me. I was her life support. She felt no pain. She can’t hear, see or think. The damage to her brain would be extensive.

“My initial thoughts, that day and into the night, was ‘I can’t do that. I can’t spend the next 20-something weeks knowing that my baby’s not going to live,’” Melissa said. “I would keep getting more and more pregnant and people would be noticing. I kept thinking, ‘How am I going to deal with the questions?’ The logistics of the pregnancy just seem impossible, like it was just not something that I could do.”

* * *

Amelia, Work of the Lord

On the drive home from the hospital that night, Melissa’s thoughts were focused on her daughter – more specifically her daughter’s name.

“At some point after we left the hospital, I remember turning to Tim and saying, ‘Madilyn isn’t her name.’ It just didn’t seem like the right name anymore,” Melissa said. “I wanted her name to mean more and to suit the little girl I was just beginning to know.”

After returning home, Melissa got on the Internet and did a reverse word search. She typed in the words “gift” and “of the Lord.” Over 60 names came up. She carefully scrolled through the list of names and their meanings. Melissa had been searching for a few minutes when she came upon “Amelia,” one of the names that had made the short list.

Amelia, Work of the Lord, seemed like the perfect name. Grace, by the Grace of God, was chosen as Amelia’s middle name the next day.

Tim and Melissa share a strong commitment to their Christian faith, so it was only natural that they would turn to that faith for guidance and support during their time of crisis. They met and prayed with their pastor, Rev. Roland Jank, Jr. of Omaha’s Mount Olive Lutheran Church.

“It is kind of a gray area, at least in the Lutheran Church, “ Melissa said. “Our pastor came over and spoke with us and prayed with us, but really didn’t say what to do.

“My dad spoke with his pastor at Trinity Lutheran Church in Glenwood. The church doesn’t have a specific policy for something like this, but the preference would be that the pregnancy be carried to term if the mother’s life is not in danger.”

* * *

Carrying Pregnancy To Term

Tim and Melissa knew they would have the love and support of their parents, Larry and Joyce Raabe, and Rod and Karen Lorang, no matter which direction they would decide to go with their pregnancy.

Melissa took a couple days off from her job as the advertising sales representative at The Opinion-Tribune newspaper and Tim did the same from his position as an independent insurance agent with N.P. Dodge in Omaha. They pondered their decision and enjoyed spending quality time with Noah.

“It took us a week to kind of wrap our heads around it - for what it meant for her (Amelia), for me, for our family,” Melissa said.

Tim said consideration was given to inducing early, but in the end, he and Melissa both came to the conclusion that carrying their pregnancy to its natural term was the right option for them.

“I don’t think either one of us considered the abortion,” Tim said. “I think maybe we looked at inducing early when the baby would be viable, but for some reason, I think we both felt something inside of us that said it wasn’t the right way to go.”

Melissa concurred with Tim.

“I think we always knew that terminating at any stage just didn’t feel right, but it was more, ‘Can we do what’s being asked of us?’” she said. “I think it’s impossible to separate our faith from the decision. To say faith didn’t play a part would be a lie, but was it solely because we felt like this is what the Bible says, the answer is no.”

* * *

‘Let it be joyful’

It’s now been more than seven weeks since Tim and Melissa first learned of their daughter’s anencephaly. The reality of the situation has settled in and Melissa has taken on the glow and appearance of a pregnant mother. She’s fielded the awkward questions from strangers and acquaintances that are unaware of the anencephaly and she’s sensed the uneasiness from friends and relatives who know about the condition but are uncomfortable talking to her and Tim about it.

Melissa’s handled her pregnancy in the only way she knows how – in an open and positive manner. “All children are a blessing,” Melissa says. She wants to enjoy and celebrate the precious time she has with Amelia, before and after birth, and she wants those around her and Tim to celebrate as well.

“We’re not going to go in a corner and cry,” she said. “My focus is to experience it (pregnancy) fully, to appreciate every movement and kick – to let it be joyful.”

One of the first actions Melissa took after selecting Amelia’s name was setting up an Internet blog in her daughter’s honor - ameliagracelorang.blogspot.com. Melissa is the administrator of the blog that is affectionately named “A Journal of Life by Amelia’s Mommy.” Melissa shares spiritually based messages of faith and love in the journal almost daily, along with a sprinkling of her own thoughts and feelings about Amelia, motherhood and a variety of other matters.

Melissa’s utilized the blog to educate her readers about anencephaly, share family photos (and Noah’s artwork) and to make friends feel at ease about discussing Amelia and the pregnancy.

The blog has been beneficial to Amelia’s mommy in many ways.

“Amelia’s blog has been a really neat way of sharing our journey with Amelia with our family and friends,” Melissa said. “My mom’s family in particular is spread across the map so the blog makes the miles between us feel less and less. One of my aunts has said she has to remember to call me because she feels like she talks to me every day as she reads the blog.

“Amelia’s blog is also one way I can mother her. There are so many things I will “miss out on” when she flies to Jesus. I can do something every day to honor, celebrate and love her; I can blog.”

In one of her blog postings, in which Melissa talks about the inner conflicts she has experienced personally with the national abortion debate, she declares herself to be “Pro-love,” a term she borrowed from a film made about an anencephalic child.

“I’ve never truly identified with the political terms of being pro-life or pro-choice,” she said when asked to explain the blog. “Personally, abortion has never been an option for me because of my faith and how I feel personally. I just don’t think that’s something I could ever do. Not to say that’s right or wrong. Many women out there have different feelings.

“I had been very hesitant to write that Pro-love blog. I was somewhat reserved with it in part because I will not pass judgment on anyone that’s had an abortion for any reason. Their situation is totally different, or maybe it was identical, but they are at a different place.”

* * *

Mommy, ‘the planner’

The blog isn’t the only way Mommy has chosen to express her love for Amelia. Melissa and Tim know that certain plans have to be made in regard to their daughter’s life and death. It’s a process, Tim admits, that’s been difficult emotionally.

“As much as I try to avoid Melissa’s planning, I appreciate it,” Tim said. “I read her blog every day and it just amazes me how strong she is and how she’s able to cope. I’m a wreck. I try to avoid talking about the last arrangements, going to the hospital and ‘what she’s going to wear.’”

Melissa smiles and shakes her head when hearing her husband talk of her strength and the plans and arrangements she’s making for Amelia. Any perceived strength Melissa has comes from God, she insists.

“I just think the compliment is going to the wrong person,” she said. “As I said in one of the blogs, I don’t think that I’m strong. I would rather say that I am strengthened. It’s not about me, it’s not about Tim.”

In addition to making final arrangements for Amelia’s funeral and burial, Melissa has put together a detailed birth plan for the day of her daughter’s arrival in late July or early August. The plan outlines medications Melissa wants and doesn’t want to receive at the time of delivery, their desire to have an immediate baptism take place upon Amelia’s birth, bathing and dressing instructions, family and friend visitation, life-support guidelines and arrangements to have Amelia’s heart valve and aortic arch donated to Nebraska Organ Recovery upon her death.

“I am a planner. That is what I do,” Melissa said. “It’s not necessarily therapeutic. I would have been planning her nursery. I would have been making sure she had every piece of clothing and baby thing that we are going to need for her life. Instead, I’m making sure her life, short albeit, can be as peaceful and love-filled as possible, so that we can be prepared as a family so that we can give her that. That’s very important. There are arrangements that do need to be made. I would rather make them now and prepare.”

* * *

‘All children are a blessing’

Mother’s Day is this Sunday. Father’s Day is next month.

For Tim and Melissa, a couple that will mark their fourth wedding anniversary on July 2, Mother’s Day and Father’s Day are special opportunities to celebrate and appreciate parenthood and the time they have together with their children.

Amelia represents Tim and Melissa’s third pregnancy. A miscarriage ended their first pregnancy in July 2007 and Noah was born on Aug. 25, 2008.

“It does give you a bit of perspective in that to be a parent is a blessing and children are a blessing,” Melissa said. “Healthy or otherwise, all children are a blessing.

“We do have this time with Amelia. We have time with Noah, but we don’t know how long that time’s going to be either. We are much more grateful for the time we do have with our children while they’re here on Earth.”

Tim expects Father’s Day to have some added personal meaning this year, not only because of Amelia, but because the day will provide him with an even greater appreciation for his son.

“I think we’re extremely lucky to have Noah,” Tim said. “Having Noah here – seeing him growing - helps me. Having him here is going to make it (Father’s Day) a little easier for me.”

Since learning of Amelia’s anencephaly, Tim and Melissa have relied heavily on their faith to help them cope and stay strong. They’ve also been touched and uplifted by the support and prayers they’ve received from relatives, friends and people they’ve never met who are telling them that little Amelia has in some way had an impact on their lives, spiritually or otherwise.

Tim and Melissa take comfort in knowing that through the possible donation of her heart valve and aortic arch, Amelia may help preserve the life of another child. They are hopeful that through their own participation in a study being conducted at Duke University, the number of anencephalic pregnancies may be reduced or eliminated in the future.

* * *

‘She is perfect to us’

Melissa has received support from other “mommies” of anencephalic children she’s met online over the past weeks. Meeting other mothers who have experienced what she’s going through has provided Melissa with reassurance.

“Certainly, the other mommies I’ve connected with, their stories are very precious to me because I’ve had one-on-one conversations with them about their experience with their babies and anencephaly,” she said. “Two of the mommies I’ve spent a great length talking with are Renee and Julie. Their daughters are Amanda Grace and Lyndan Grace, and we have Amelia Grace. I do not think that is a coincidence by any means.”

As difficult as the past seven weeks have been for Tim and Melissa, they take comfort in their firm belief that God had a reason for choosing them to care for Amelia Grace during her time on Earth. They will cherish every minute they have together with her.

Tim and Melissa are preparing themselves for more sorrow, more tears and the difficult days that lie ahead, but through their faith, they will accept God’s plan for their daughter with open arms.

Amelia Grace is a blessing and a reason to celebrate.

“There’s a time for tears, but there’s a time for joy, too. She’s worth smiling and celebrating about,” Melissa said. “Just because she has a birth defect that is fatal, it doesn’t somehow devalue her life. She is here, she is precious and she is perfect to us.”

Friends of the Tim and Melissa Lorang family are hosting a pair of blood drives on Saturday, June 12, in honor of Tim and Melissa’s daughter, Amelia Grace.

The two blood drives are taking place simultaneously in Glenwood at the Mills County YMCA (from 8 a.m. to 2 p.m.) and at the America Red Cross blood donation center at 132nd and Dodge Street in Omaha (from 9:30 a.m. to 12:30 p.m.).

Donor appointments for either blood drive may be scheduled by e-mailing mary-n-joe@hotmail.com or by calling Joe at 402-650-8295 or 527-3191.